DADofPotsSon Posted November 12, 2017 Report Share Posted November 12, 2017 About 8 to 10 years ago my Son#2 complained of this, and he then had a sleep study and it was determined his oxygen level and blood pressure both were very low caused by Hypopnea and they said he did not have sleep apnea. We also had confirmation of this thru his college roommate who was up up very late studying and said he had mild convulsive syncope in his sleep on several occasions usually about 2:15 to 2:30 AM. It was a normal thing when he had syncope to have mild convulsions. He did complain of this during High School but we just disregarded this as lack of sleep or poor sleep issue. It was corrected when he went on Florinef! DADofPOTSSon Quote Link to comment Share on other sites More sharing options...
Hippopotsamus Posted November 13, 2017 Report Share Posted November 13, 2017 I had this happen to me several times when I first developed POTS during my third trimester of pregnancy and it felt awful. I remember also trying to describe it to people as feeling like my body was waking me up so I could pass out. It startled me out of sleep and my chest and breathing and head all felt weird. I haven't had this happen since giving birth that I recall, I also got on metoprolol right after delivering so not sure if that helped. Quote Link to comment Share on other sites More sharing options...
SZQ Posted March 8, 2018 Report Share Posted March 8, 2018 I have been having episodes of feeling like I am passing out or fainting when I am sleeping and roll over from one side to another. It freaks me out. I feel short of breath and often break out in a full body sweat. What is wrong with me. Quote Link to comment Share on other sites More sharing options...
Mistri_The_Squirrel Posted March 9, 2018 Report Share Posted March 9, 2018 I was just thinking about this last night, because I sometimes wake up feeling like I'm going to pass out. Led me to wonder if it's possible to "pass out" while you're sleeping. The idea of passing out while you're sleeping sounds absurd, and it also sounds absurd that a so-called "postural" problem could lead to this while lying down...but as soon as I saw the title of this thread I thought, "yes!!" Not sure precisely why this happens, but I get it too. Quote Link to comment Share on other sites More sharing options...
Peter Charlton Posted March 9, 2018 Report Share Posted March 9, 2018 Because of my breathlessness and hospital oxygen monitor showing my oxygen at 87% when awake even though my lungs are good and sometimes oxygen is 99%, so I bought my own oxygen monitor that you wear all night. Occasionally it goes to an average of 85% which I understand is quite dangerous, should be between 95 and 100%, 88% is a red line and 15 minute medical emergency. I had a nightmare I was suffocating but managed to wake up and then remember to breathe. I think that is what happens to us, we forget to breathe. The Autonomic Nervous System has blood oxygen monitors that tell our lungs to work more if oxygen gets low whilst we are asleep, and of course, if our ANS isnt working properly! I was referred for a sleep apnea clinic but they just gave me the same monitor I already have and said there was nothing wrong with me because on the night I used their machine, my average was 90% which it tends to be half the time when I test it, the doctor didnt want to listen when I said but sometimes it gets a lower average and sometimes its ok. Fortunately my GP is concerned and getting a second opinion. This is one of my overnight oxygen graphs I took. Quote Link to comment Share on other sites More sharing options...
issie Posted March 9, 2018 Report Share Posted March 9, 2018 Consider Central apnea. I have both central and obstructive. With central, your brain doesn't tell you to breathe. I have a CPAP that can tell me how many central and/or obstructive apnea I have in an hour. I always have centrals. Sleeping with your head elevated helps. It also helps the brain to drain lymph better when you sleep. That's when that happens. Also, mast cell issues tend to happen to me a lot when I try to sleep. Having my allergy meds right before bed, helps this. The startle thing doesn't happen as much with MCAS controled. Issie Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted March 9, 2018 Report Share Posted March 9, 2018 I have these, too, and my BP isn't much better when I am lying down. I also have both types of sleep apnea and use a CPAP which gives reports. I have a pulse ox which is somewhat uncomfortable to keep on my finger all night.... I had the overnight oximetry study professionally done and that night I literally never got to sleep, i was not doing well enough to ever fall asleep. So, my results were fine because I was awake! I've used mine a couple of times and gotten borderline results, but I wasn't sleeping soundly or for very long when I wore it. I figure I can present the recordings to one of my doctors if needed. Sleep is definitely one of my worst issues. Quote Link to comment Share on other sites More sharing options...
Womble Posted April 4, 2018 Report Share Posted April 4, 2018 I am back here again, trying to find answers to my nocturnal episodes. I have been trying to get a referral to have them investigated since last year, but noone knows where to send me. I am already under an electrophysiologist, the local pots clinic is basically just a cardiology department, endocrinology was suggested, as there appeared to be some sort of hormonal/monthly element to the episodes until recently, but ultimately I was told they have written to the pots clinic to ask for advice where to refer to and had no response. I am now planning to ask for a sleep study. I doubt it will find much, based on others’ experiences, but it’s a start and will potentially rule certain things out. My episodes have been getting steadily worse. They used to be only during the luteal phase of my cycle, but are now pretty much constant and much worse in nature. The last fortnight has been absolute h***, with me basically being up all night every night with whatever these adrenaline type surges and wakings are and I ended up sobbing to my poor exhausted husband at 3.00 am this morning because I was so exhausted, but my body wouldn’t let me sleep and there is no prospect of help on the horizon. I am a carer for two children who have disabilities (one ASD, the other HSD/JHS & POTS) and I need to be able to function and drive them to and from school and medical appointments, etc. Hence me being online looking into POTS and sleep again today. I just happened across a UK Cardiologist who is very interested in the sleep issues which occur in POTS and has done a series of relatively recent videos on youtube on the subject. The first video in the series was such a relief to watch - he gets it and has some ideas what we can do about it. I am still working my way through the videos, but thought I would post a link to the first video in case someone else finds it useful. Quote Link to comment Share on other sites More sharing options...
Minnie Posted July 14, 2018 Report Share Posted July 14, 2018 Hello. I am new here. I have not yet been diagnosed with Dysautonomia yet but I had the "almost fainting" kind of experience today. I am very scared. I have been suffering from extreme health anxiety since 2 months now. I'm seeking professional help for that. I don't know if that's relevant but I feel extremely lost and scared since I never had any of these before. Since the past two months my life has changed drastically. I have had several episodes of panic attacks. I remember once I woke up from sleep feeling like I couldn't breathe as if some invisible creature is trying to choke me. Then I had another panic attack in my sleep and I woke up with irregular heartbeat, weak knees, dizzy. I went to a lot of doctors, general physicians and even specialists. I keep telling them I have this weird sensation that feels like I'll faint even when I'm awake. I'm slightly anemic and I have vit d deficiency. I have been taking supplements for both of them for a month now. Yet today at dawn this happened. I'm very scared. Any information or insights in this matter from you all would really be helpful. Thank you so much in advance. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 14, 2018 Report Share Posted July 14, 2018 Hello @Minnie, welcome to the forum. I am very sorry that you are having such a bad time. The feeling of almost passing out is most likely presyncope, that means you are about to faint. I have that often but I also faint a lot. Are you able to check your HR or BP when that happens? If you could get those measurements during those events it would be very helpful to your doctor to see what is going on. Have you asked one of your doctors about dysautonomia? Maybe one of them will consider it and check you for it. To help with that you should write down your BP and HR during the events as I already mentioned. If there are any abnormalities they might do a Tilt Table Test which helps to diagnose POTS. Of course I am not saying that I think you have it ( I do not want to add to your worries ) but if you do they can find out. -- I too get "attacks" similar to what you describe as panic attacks but in my case they are caused from high norepinephrine levels and I need to lie down in a dark room and wait them out. --- I very much hope they will find some answers for you. Don't give up - you are definitely not alone and there are many people on this forum who share your symptoms, dysautonomia or not. Best of luck - keep us posted on your journey! Quote Link to comment Share on other sites More sharing options...
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